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The Importance of Shared Medical Decision-Making for PAH Care

Posted on August 29, 2022
Medically reviewed by
Steven C. Pugliese, M.D.
Article written by
Caroline Wallace, Ph.D.

  • Shared medical decision-making encourages individuals to take an active role in tailoring their treatment plan by clearly communicating with their health care provider.
  • Treatment of pulmonary arterial hypertension (PAH) often requires combination therapy or multiple treatments, which may be burdensome for individuals who don’t actively engage in shared decision-making with their provider.
  • Research shows that health outcomes improve when individuals with complicated conditions, such as PAH, participate in shared medical decision-making.

Pulmonary arterial hypertension (PAH) is a specific type of pulmonary vascular disease that occurs when high blood pressure affects the right side of the heart and the arteries in the lungs. Over time, this rare condition can lead to heart damage.

By taking an active role in managing PAH symptoms, many people can successfully slow disease progression. Shared medical decision-making between you and your doctor is an important step in managing PAH.

What Is Shared Medical Decision-Making?

This individual-centered approach to health care is not new — shared decision-making was first mentioned in 1982. This approach to care encourages individuals to take an active role in their treatment plans rather than have their doctors make all decisions for them.

Shared medical decision-making promotes open and clear consultations, or discussions, between health care providers and individuals. Here is a simple model of how shared decision-making might look:

  1. Your doctor introduces the various treatments available for your condition.
  2. Your doctor describes the pros and cons of each option, factoring in your specific health needs, personal preferences, and quality-of-life goals.
  3. Your doctor helps you determine which treatments best meet your long-term health goals.

This collaborative process between an individual and their health care provider is particularly helpful for complicated or long-term conditions, such as pulmonary arterial hypertension. Although it may be helpful to include family members in the shared decision-making process, ultimately, the treatment plan is your choice.

Shared medical decision-making can benefit people with PAH and may make it easier to stick to a treatment plan. However, there are instances when this approach isn’t practical or possible.

For example, shared decision-making requires time, which is often lacking during a doctor’s visit. Physicians may place time limits on their appointments, which may not allow for much education and discussion during the visit. Additionally, shared medical decision-making might not be possible if a condition requires urgent treatment. Despite these potential drawbacks, people living with PAH should try to participate in shared medical decision-making whenever it is reasonable.

Why Is Shared Decision-Making Important for People With PAH?

The diagnosis of pulmonary arterial hypertension involves a process of elimination to rule out other potential diseases and causes. Furthermore, PAH treatments may differ from person to person, depending on the type and functional class (severity) of PH, the individual’s age, and other health factors. Since PAH is a progressive condition that gets worse over time, clear communication with your doctor about your symptoms and treatment plan can help improve your outcomes.

Determining Appropriate Treatment

If you are living with PAH, you may be familiar with multiple procedures and treatment options — phosphodiesterase type 5 (PDE5) inhibitors, prostacyclins, endothelin receptor antagonists, calcium channel blockers, and more. Each option has its own set of pros and cons, so shared medical decision-making in PAH allows you to safely choose the treatment that best matches your health, your lifestyle, and your treatment goals.

Managing PAH and Complications

Properly managing your PAH is important because the condition can lead to other heart disease complications, including right-sided heart enlargement and heart failure. Research shows that individuals who work with their doctors to plan their treatments are more engaged in their health, and this process helps improve outcomes in PAH.

Maintaining PAH Care During the Covid-19 Pandemic

The pandemic caused changes in medical care for many people with PAH, sometimes affecting their PAH and overall health status. In a survey of myPHteam members with PAH, 49 percent of respondents reported worsening health during the pandemic.

One-third of the surveyed members said that pandemic-related disruptions in medical care or treatment were responsible for their health changes. Additionally, the results showed that sudden changes in medications or health care providers were potentially dangerous for people living with PAH.

How People With PH Can Prepare for Shared Decision-Making

Living with PAH and making important decisions about your treatment plan can be stressful. If you are living with idiopathic PAH, in which the cause of your PAH is unknown, the inability to fully understand your condition may also be stressful.

The American Heart Association offers some some suggestions that can help people living with PH prepare for and navigate medical visits:

  • Take time alone to assess your goals related to quality of life (well-being) so that you can clearly communicate them to your doctor. Writing your thoughts in a journal could be a helpful practice.
  • Bring a family member or trusted friend to health care appointments so they can help you take notes and remember important points from the discussion.
  • Tell your doctor about any symptoms, health changes, or other concerns.
  • Ask about the benefits and risks you can expect from different treatment options.
  • Repeat your doctor’s instructions or information back to them to make sure you understand and are not missing anything.
  • Use your patient portal or provider’s online messaging system to send your doctor a follow-up message if your questions were not answered during your appointment.
  • Request a referral to other cardiology specialists if your current health care provider doesn’t consider your preferences or let you share in the decision-making process.
  • Ask your cardiologist about clinical trials that may be right for you if you have difficulty managing your symptoms with your current treatment plan.

Although life with PAH may be challenging, people living with PAH can lead fulfilling lives by taking steps to better navigate their care.

Joining a support group like myPHteam can also be helpful for navigating life with PAH. On myPHteam, people talk about life with PAH and offer support and advice to others with similar experiences.

“Weigh your pros and cons, and take your time making your decisions,” recommended a myPHteam member. “If that fails, do you have a close family member that you can trust? If so, maybe that person could help you.”

Talk With Others Who Understand

On myPHteam, the social network for people with pulmonary hypertension and their loved ones, more than 46,000 members come together to ask questions, give advice, and share their stories with others who understand life with PH.

Have you engaged in shared decision-making for your pulmonary arterial hypertension care? What practices have you found useful and beneficial for your care? Share your thoughts in a comment below or by posting on your Activities page.

All updates must be accompanied by text or a picture.
Steven C. Pugliese, M.D. is affiliated with the Hospital of the University of Pennsylvania in Philadelphia, serving as the director of the pulmonary embolism response team, co-director of the comprehensive pulmonary embolism program, and an assistant professor of clinical medicine. Review provided by VeriMed Healthcare Network. Learn more about him here.
Caroline Wallace, Ph.D. has a doctorate in biomedical science from the Medical University of South Carolina. Learn more about her here.

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